Lyme Patients, Make Your Voice Heard

Time-sensitive: Act now to make your voice heard at the national level by submitting your comments to the tick-borne disease working group by June 24th

Science shows that chronic Lyme exists. Now it’s time for government agencies to acknowledge it, specifically the CDC.

Make your voice heard to create change at the national level. Please submit your written or verbal comments to the Tick-Borne Disease Working Group by June 24, prior to their next meeting on July 8.

In the last meeting of the TBDWG, the panel argued over whether to update its guidelines on diagnosing and treating Lyme disease. After more than an hour, CDC spokesperson Ben Beard stated, “The vast majority of Lyme disease patients are served quite well by the guidance we have on our website.” This is unacceptable, because:

1. Lyme disease is a public health crisis. Research shows that two million people could be suffering from post-treatment Lyme disease (PTLD) by the end of 2020.  According to a joint study conducted by scientists at Global Lyme Alliance (GLA) and Brown University, more than two million people in the United States could suffer profound disability from PTLD by the year 2020. Noted researcher and former chair of the TBDWG John Aucott, M.D., states that … “These numbers are on par with other important public health threats such as HIV. When combined with the recognized severity of PTLD for patients, the impact is even more significant.”
2. Science shows that while most patients recover when diagnosed and treated early, up to 20% remain ill.
3. Science shows that when Lyme is not treated early, due to being undiagnosed, misdiagnosed, inaccurate diagnostic tests, etc – it’s harder to eradicate the disease and the symptoms it brings.
4. Many physicians follow CDC guidelines on diagnosing and treating illnesses such as Lyme disease, based on the CDC proactively marketing to physicians and the CDC serving as an approved resource for the medical community. Therefore, if the CDC does not acknowledge any stage of Lyme other than acute, neither will physicians. This directly harms patients.

Part of the CDC’s mission states “ … As the nation’s health protection agency, CDC saves lives and protects people from health threats. To accomplish our mission, CDC conducts critical science and provides health information that protects our nation against expensive and dangerous health threats, and responds when these arise.” By denying the existence of post-treatment Lyme, persistent Lyme, and chronic Lyme disease, the CDC is not protecting people from health threats and serving in the best interest of patients and the general community.

Make your voice heard:

• Submit Comments (verbal or written) for the next meeting by Wednesday, June 24th to tickbornedisease@hhs.gov.  Please click here for further instructions to submit.
• Next Meeting held online, Wednesday, July 8th
• Register for the online meeting
• View Agenda